Autism as a barrier to housing in New Zealand?

Two days ago I spotted a story about a family who were unable to get a decent home – even to get a home through the State housing system – because of the behaviour of their three autistic children. Predictably, when I turned to a large local forum to see how the public was reacting to the story, I found people attacking the couple for breeding at all, and for not stopping their breeding after the first two turned out autistic. There were also the usual ignorant comments about how the parents just need to control their animal children. The comments I read made me feel ill and depressed me to such a degree that I put the story on the back-burner, telling myself I’d deal with it when I was feeling stronger and less emotional.

By 401K 2013, Via Flickr

Today, Campbell Live – a local current affairs show – ran a story about an elderly mother in Christchurch trying to find a temporary home for her two autistic sons. Her sons are in their 50’s, and have the mental age of toddlers. They look to be lovely men, with big hearts and gentle souls. The story their mother told of their history was very similar to Temple Grandin’s story, from the harsh coldness of the diagnosis so many decades ago, to the diagnostician’s insistence that their only future could be in an institution and that their mothers would be better off forgetting they ever had them. In both stories too, the mothers did everything they could to love and care for their children in the face of such cold pessimism. But where Temple became an expert in her field, these two boys have intellectual disability alongside their autism and so their story goes a different route, still it was interesting to see the historic parallels in such different countries.

All that aside, the point of the Campbell Live story is these two lovely men – who have full-time carers, and who only need a home for 6 months while their home is rebuilt – can’t find a home in Christchurch. The reason they can’t find a home appears to be one of discrimination, as the mother explains in the piece. They appeal for anyone with a home available in Christchurch to please offer it to these lovely men (the email, if you can help, is campbelllive@tv3.co.nz .)

All that reminded me of a third story, one I shared only in passing in a post I did in 2011. In that story, a family was being kicked out of their home and having trouble finding a new one, because of their autistic son’s destructive behaviour. Again, the behaviour was beyond the child’s ability to control. Again, the parents were deeply loving and dedicated to their child. Again, the housing options available to them were as good as non-existent.

Here’s what I want to say about these stories and what they tell me: New Zealand has a very serious gap in meeting a fundamental need (and arguably a fundamental right) to have a place for people to live; even when the people have the money to pay for board (all three examples have families who are willing and able to pay board, this is not a matter of pure charity). If the private market refuses to respond to the needs of these families and individuals – whether it is because of discrimination or founded fears about what may happen to their homes – then where must these families turn? For the Christchurch men, they simply need people to stop discriminating against people who are different, but for the other two families, they need an option that doesn’t seem to exist; someone willing to take on tenants who are likely to cause some damage, but through no intention or fault of their own.

What you need (I hear some of you say), is a State Housing system, that is willing to take in those who the private sector turns away! But we have that here already, and even they turn away these hard cases (see the three autistic kids story in particular for where this is made abundantly clear). Why do we even have a State back-up safety housing option, when it won’t deal with the hard cases, where totally innocent disabled children face homelessness? What’s the point? It’s OK to look out for the poor, but the disabled are on their own..?

I’ve seen the public voice the alternative of sticking these kids in institutions “where they belong.” You need only watch the Campbell Live piece on the Christchurch family, to see the hurt and damage that can do (and I do urge you to watch the video, it will break your heart though). You need only see the love and dedication of these parents of all three examples, to know that sticking these kids in institutions will create more problems than it solves; they are already in loving homes, why would you encourage tearing them apart, rather than encourage proper available housing that allows the family to stay together?

The stories that make it to the news, are only ever a portion of the reality out there. It takes a certain level of personal fortitude and know-how to get the media to hear and share your story. I can only imagine how many other families with autistic and disabled children, are struggling through a similar situation.

My family too, are renters, not home owners. It’s hard to earn enough money for your own home when you have a child with very high needs. Not only do they require your time more, they cost more to care for too, there is no way a disabled child will not significantly impact on your finances, and government support doesn’t ever come close to matching the costs. That’s reality, you live with it, you make it work, but it can leave you stuck in a position of renting for that much longer, and thereby leave you very vulnerable to just this housing problem. When you have a child with high needs, you also tend to be restricted on what areas you can live, because services availability and Special Schools or mainstream schools with appropriate supports, can force you to move to or stay in particular areas. I know of many families who have moved to access appropriate schooling or support for their autistic child, and again, we are a family who have had to face this issue too.

The point being, that between lost wages and having to live in the “right” area for your child’s needs to be met, this housing issue is foreseeable and will not go away. If anything, under the current high-pressure housing market, it is only going to get worse. Something has to change, whether it’s in people’s ignorant attitudes towards the intellectually disabled, or in the government’s attitude towards why it bothers to be in the housing market at all. (Personally, I’d also love to see change in the current highly restrictive zoning on schools and support services, but one thing at a time!) If things don’t change, there’s going to be a growing underclass of the poor and disabled, without decent (or any) accommodation. Or we could just stick them all in institutions and tell their parents not to breed, since so many New Zealanders think that’s an adequate response to a family in strife. It makes me fearful, for my son, for myself, for all those other families, when I read those sorts of responses. When did we become a country that sees a call for understanding and compassion, as a good opportunity to threaten people instead?

Autism is a barrier to getting a home in New Zealand (it will even stop you being allowed to stay in the country). Can we find a way to turn that sentence into a lie?

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13 Responses to Autism as a barrier to housing in New Zealand?

  1. New Zealand needs to be a bit more ‘cannabis for autism’ aware.
    Put it this way, no one really wants to live with me unless I am properly cannabinated.
    The rate at which I am expelled from homes for not using cannabis is far greater than the rate at which I am expelled for using cannabis. Go figure. X

  2. Wife of Jack says:

    I detest the terms “breeding” or “breed” it is loaded with fear, judgement and class stereotypes. Reducing human beings to livestock. The worthy rich or super intelligent people never “breed” apparently, they engineer the production of the perfect number of good looking, planned, healthy, fully functional, future taxpayers.

    Did anyone howling at this couple in the first article think that perhaps the children’s problems were diagnosed only after all three had been born? This would be a common enough scenario given that many children with Autism are not diagnosed until an older age and each subsequent child may take away some of the critical focus required to observe the development of the older siblings.
    There is nothing wrong with adding to a family with autism present, given that the risk of having additional siblings with the condition is not that high.

    In that article I saw a struggling family, doing their best in a truly challenging situation. We do forget sometimes, the world is still a place of fear and ignorance, many people would still have all our precious children locked away or segregated for societies benefit.

    We must be vigilant to combat these internet bullies who think they can say what they like behind the safety of a computer screen. Cowards one and all.

  3. Matty Angel says:

    I just want to say I have the most amazing landlords, I met them about a year before the big earthquake, they gave me a chance!! They also let me have a kitty!!! and after the earthquake they let me move here! Into another property they had, they could have raised the rent but they didn’t… they could have made me pay more bond money since this one costs a little more, but they didn’t. 🙂 In fact he did one better, he got the plumber to come and helped get the washing machine working for my place because its in the garage 🙂 When the support people rang and said they have a safety concern with the steps, he went and got non grip stuff and put it on the stairs for me… he even texts me whenever work is about to happen around the property, even if its on the neighbouring flat 🙂 they also don’t mind talking to my care and support workers… or even my friends if there are any concerns about anything 🙂

    So not all landlords are bad, there are some super good nice wonderifical ones out there to 🙂

  4. Hilary Stace says:

    Wonderful coverage of the issues, thanks. The right to housing is fundamental.

  5. nordling2013 says:

    I can relate to the damage issue. My autistic grandson has an obsession with neatness that makes him unable to resist anything dog-eared. If he sees a dog-ear, he tears it off. As a result they have large swatches of wall in their house with the wall paper missing. What we need is some architect or creative designer to come up with interior designs that are immune to such damage. We have handicap accessible rooms and facilities; ASD compatible homes would be a variation on that theme.

    • What an excellent thought nordling2013. I can see the idea being easily extended to other areas of a home too, like having high-enough fences and secure enough entrances to make it diifcult for wanderers to get on the street, which was another issue raised for the three-child family.

  6. Wife of Jack says:

    Hospital design often incorportates reinforced hallways and doors to withstand the shocks and abbrasions of wheelchairs, beds and stretches being transported at high speed. Industrial design for all sorts of applications could be applied to newer and retro fitted state housing. Whenever I see reports of damaged walls and doors in state houses one has to wonder the sanity of putting cheap and thin plaster board walls at the bottom of a steep staircase in a family home. (Just one example I have seen.) Even a family with no violent behaviour present would have trouble keeping that undamaged. Cheap hollow core doors are also no match for a teenager in a rage. Challenge some design or architecture students to come up with Autistic proof housing! The realities of this need to be faced by house designers, in doing so they could create houses that offer a measure of future proofing for every family whaterver their situation.

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